Four years ago, Sonali Lakhani was told she may never walk again after her muscles had weakened due to a rare incurable genetic disease – but this weekend she will abseil down the country’s tallest sculpture.

After being described as a ‘medical mystery’ by doctors who could not work out what the illness was that regularly put her in A&E, Miss Lakhani was eventually diagnosed with Ehlers-Danlos syndrome (EDS) at the age of 15.

The condition can manifest different symptoms in different people, but for Miss Lakhani it means she has to be tube fed, is partially sighted, can easily suffer dislocations and can experience blackouts.

On Sunday, the 19-year-old from Stoke Road in Guildford, will abseil down the ArcelorMittal Orbit in London’s Olympic Park, in aid of EDS SupportUK.

It will be a challenge for the former George Abbot School pupil, but one she is willing to go through to raise money for the charity and awareness of the condition.

“It is a genetic condition so you are born with it, but it is not something that is known about straight away,” she said.

“As I was growing up I had issues and was always in A&E, and the doctors turned around and said I was a medical mystery.

“They could not tell me why I was injuring myself and getting certain problems.”

The condition affects the body’s collagen, which impacts Miss Lakhani’s eyes and joints, and also means her stomach and oesophagus do not work properly.

Another symptom causes blood pressure to drop and the heart’s pulse rate to increase, which has led to Miss Lakhani experiencing blackouts.

She said that due to a lack of awareness people can be misdiagnosed, and at one point she had her appendix removed as doctors thought that would resolve the issue – it did not.

“When we got the diagnosis, we thought I could probably cure myself,” she said.

“There is no cure for this illness. It is just about man-aging it.

“There is not enough research to find a cure. They are not sure what gene is faulty and so it is just about managing it.

“In the beginning, it was very hard to know what I could and could not do because I was very weak – I couldn’t eat or drink anything at all.

“We didn’t know what we were dealing with because no doctors were saying what to expect.

“It was hard to manage, but now I’m getting older I’m getting nutrients every day.

“I used to be in a wheelchair and the doctors said ‘you probably won’t walk again because you are so weak’, but, doing physiotherapy, slowly but surely I have started walking with a crutch.

“I have to pace myself and not over-do things.”

Miss Lakhani completed her travel and tourism studies at Guildford College this summer, and she aspires to work at Heathrow Airport for Emirates ground staff due to her love of airports.

“People are still struggling,” she said. “People are still not understanding the condition.

“I felt that, yes, I have the condition and it will be a struggle to do the abseil. I will be in lots of pain after, but it is a challenge I want to do to make people aware of the condition, to raise money to help the charity because it doesn’t get many donations and is struggling to help us sufferers.